Parents who experience pregnancy loss to help shape future support

Researchers are working with parents who have experienced pregnancy loss to improve care and support.

The initiative is named the Roberta Project. It is part of the NIHR Southampton Biomedical Research Centre's (BRC) Data, Health and Society research theme.

The University of Southampton project aims to change how personal information is used by health services.

Empowering communities

The NHS currently collects and shares patient medical data to improve its care. However, it usually discounts everyday information about people’s lives.

Now, Southampton researchers want to develop a new model. This will give parents more control to decide how their data could be used to support others.

Professor Age Chapman is leading the initiative. She is head of the university’s Digital Health and Biomedical Engineering Research Group.

She said: “Health-related data outside of the NHS is increasingly important for improving health and wellbeing, but how can we be sure it is being handled with care, transparency and consent?

“The Roberta Project is about empowering communities to say where they want data to be used, so their voices and experiences can be at the very core of maternal support.”

Developing a 'data trust'

As part of the project, researchers will ask parents to share information from everyday tools. These include fitness trackers, wellbeing apps or diaries.

Professor Dame Wendy Hall is director of the University’s Web Science Institute. She leads the BRC’s Data, Health and Society Theme.

“Data collected with consent is more inclusive and, above all, impactful for new research or improving care,” she said.

“We ultimately want to develop a ‘data trust’ – a framework for data governance – which puts families who have experienced early pregnancy loss at its centre.

“It would allow them to collectively decide how their information is used to shape support for those who may be affected by miscarriage in the future.”

Using Roberta’s story

The Southampton team are conducting workshops among community groups with lived experience of pregnancy loss. They will also include clinicians, policymakers and legal experts.

These sessions use scenarios featuring a fictional character named Roberta. She navigates pregnancy after loss using digital health tools, such as phone apps.

Professor Michael Boniface is project co-lead and an associate director of the Web Science Institute.

“Sadly, some tools fail to account for pregnancy loss, often continuing to send notifications after a miscarriage,” he said.

“Roberta’s story helps participants surface these challenges and reimagines what respectful, inclusive digital health design might look like.”

The researchers hope the Roberta Project can serve as a national model for more equitable use of non-NHS data in tackling challenges across health and care.

Read more about the Roberta Project at: www.southampton.ac.uk/wsi